“Jacob has been living with Sickle Cell for almost 10 years, and all I have found is that everything is a struggle. He’s had some terrible experiences – at what are supposed to be some of the best hospitals in London.”

Like many mothers who are carrier of the sickle cell gene, Shree Hall did not knowshe had Sickle Cell Trait until she was pregnant with her first child and was tested.

“By the time I had Jacob – who is my youngest son, I knew there was a possibility he could also be a carrier or inherit the condition, but even then, when he was diagnosed, it was still a shock.”

Editor’s Note: Sickle Cell Disease and Sickle Cell Trait can be identified by a simple blood test that can be carried out by your GP Surgery.

In this story, she talks about her lack of confidence in healthcare professionals after being told to consider termination, her search for support and the variation of care her son receives.

“I have to take the lead on everything, down to setting up his transfusions. Dialogue between services is appalling. From my GP to our hospital consultant and community services – no one talks to anyone.

All I really want is support and a bit of empathy, but nobody seems to listen. Even just someone ringing up to ask “How are you doing?” and really wanting to hear the answer. It would mean so much. Some of my worst experiences have been of hospital treatment. When Jacob was rushed to hospital in February it took eight hours of waiting and assessments for them to actually admit him on a ward. They were so reluctant to give him any strong pain relief. They just did not seem to believe he was in pain. Either that or they did not understand. No one spoke to us we were just left to wait and see what happens until he was screaming constantly. It was sickening.

Even as a nine year old child, the attitude seems to be that sicklers are either hypochondriacs or drug addicts. When you are in hospital you have to literally scream and shout the place down to get the care you need.

For me, the only way to truly improve care for sicklers, would be for every hospital to have a lead person who understands the condition thoroughly. Someone who knows what patients need, how to support them and show empathy. It’s so important but so hard to find and not just for those people in London either.”